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EFF Resources - Biogenome Science at an International Scale: Navigating ELSI Challenges
Session title: Biogenome Science at an International Scale: Navigating ELSI Challenges Date and time: Friday, April 11, 2025 | 12pm ET US / 9am PT US Moderator: Patrick Keolu Fox, PhD … -
Publication
Myriad after Myriad: The proprietary data dilemma
N C J Law TechnolDuke University Center for Public Genomics. Grant number(s): P50HG003391 -
Publication
Evaluating ApoL1 genetic testing policy options for transplant centers: A Delphi consensus panel project with stakeholders
Clinical Journal of the American Society of Nephrology -
Publication
Public perspectives about pharmacogenetic testing and managing ancillary findings
Genet Test Mol Biomarkers -
Publication
Understanding self-management behaviors in symptomatic adults with uncertain etiology using an illness perceptions framework
J Behav MedClinical Sequencing Evidence-Generating Research (CSER) Consortium. Grant number(s): U01HG006487 -
Publication
Access to data and intellectual property: Scientific exchange in genome research
National Academy Press -
Publication
Enabling realistic health data re-identification risk assessment through adversarial modeling
Journal of the American Medical Informatics AssociationThe Center for Genetic Privacy and Identity in Community Settings (GetPreCiSe). Grant number(s): RM1HG009006 -
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Publication
Knowledge and attitudes about privacy and secondary data use among African-Americans using direct-to-consumer genetic testing
Public Health GenomicsParticipants in this study by Ziegler and colleagues found secondary research use of their data acceptable depending on the type of research being pursued. However, about half stated that use by law…